3 Ways Music Can Improve Your Mental Health
By Maya Benattar, MA, MT-BC, LCAT
Reprinted with permission from: mayabenattar.com
(Photo Credit: Gavin Whitner )
As we move through our often busy lives, music is all around us. There is rhythm in a crowd crossing a busy street or a yoga class moving through a Sun Salutation, melody in the cacophony of taxi horns or a gentle bird song. We hear music in stores, in subways, and when on hold on the phone. The question is: how can we intentionally use music for mental health?
It all starts with noticing. Noticing is a key aspect of mindfulness, without which even the most beautiful music or well-intentioned exercise will likely float right past your ears, mostly unnoticed.
1- Pay attention to your own rhythms, and the rhythms around you. Remember that we as humans are composed of rhythmic patterns – the way we walk, talk, move, and breathe is all rhythm. Notice when your body’s rhythms feel rushed and pressured, or relaxed and easy. Notice where you are, what you’re doing, and who you’re with. The simple act of noticing can yield some valuable information.
2- Develop personalized playlists. It can be so useful to have several different playlists at the ready. Think about when you need some music in your day – could be to relax, energize, or focus (or something else!). Play around with different styles and tempos, and find what works for you. If you’re creating a playlist to help you relax or energize, you may want to start out with a piece that is the opposite, and work your way to the desired mood (i.e. a relaxation playlist can start with a fairly fast piece, move through medium tempos, and wind up with a slow, soothing piece). Notice if songs vs. purely instrumental pieces affect you differently. I don’t believe in using specific pieces/genres of music for mental health, but that different styles work for different people.
3- Take a moment to ground and breathe. Here’s a simple exercise for grounding that I often use with my clients and workshop participants.
Pause for just a moment, wherever you are. Whether you’re sitting or standing, moving or still – just take a moment to come into stillness.
Now, notice the top of your head and the bottom of your feet. Become aware of how much space there is in between the two – space for breath, space for energy, space for movement.
Take a moment and take a few gentle breaths, in and out. Notice the sensation of each inhale and exhale. Imagine you can inhale what you need/want, and exhale whatever you don’t need. Perhaps inhale peace or ease, perhaps exhale stress or tension.
Why Join A Support Group? A Personal Perspective
By Barbara Cervoni, LMSW, ACSW
Director of Services and Communication
Chances are, you never thought of joining a support group. Maybe you’re not even sure what a support group is. Or maybe you’re worried about how it might feel to participate. It’s not unusual to be hesitant about trying something new.
We understand. That’s why our support groups are designed with your needs in mind. Our support groups provide a safe haven… a place where women can talk openly, share resources, stories, tears and even laughter. There’s no better place to truly connect with other women who know how you feel.
The most powerful way to learn what our support groups can offer is to see how being in a group makes a difference in one person’s life.
So, here are some thoughts from Alison, who’s attended one of our groups since she was diagnosed with breast cancer in March 2014:
Alison, a breast cancer survivor, talks about being in a support group.
Getting Started
“I started going to support group before I began my treatment. I talked with my Peer Counselor and she helped me find a group that worked for me. I really connected with everyone in the group right away. Our facilitator is great. She always makes sure to ask what’s new with everyone who’s there.”
What Group Is Like
“There’s nothing like being in a room full of people who can all relate to what you’re experiencing. Everyone has an open mind, you can share your fears and apprehensions. Everyone really does band together, everyone chimes in. Group gives me a different perspective that I wouldn’t get anyplace else. It’s other women who have been in your shoes. Being in a support group is so reassuring, so comforting. You can say anything. Or you can just listen.”
Sharing and Learning
“It’s so helpful to talk about what you’re experiencing and learn that other people are going through it too, like side effects from medication as one example. Statistics are one thing, but hearing it from another person who is dealing with the same thing, or a whole group of people, is so much better.”
How Group Has Helped Me
“Before I went to group I was a wreck. I was so anxious, so worried about dealing with hair loss and everything else. Seeing a room full of other women who had gone through the same things, or were going through the same things, at different phases, was so helpful. They talked to me about wigs, hats, how to talk to my children, how much time to take off from work. I would have been clueless about so many things if it weren’t for the group.”
Exceeded My Expectations
“I never expected to get so much out of it. My first time there everyone spent so much time making me feel at ease. They asked me so many questions about myself. When I got home my husband said ‘You are in such a good mood!’ It’s like that every time I come home from group; I always feel so much better than I did before. I almost never miss a session.”
My Advice: Give It A Try
“For anyone who’s not sure about group: Give it a try. It’s so helpful no matter where you are in the process: before, during or after treatment. It’s a place where everyone else has been through what you’re going through. Friends and family haven’t been in your shoes, these women have. Being in group makes me feel like it isn’t just me, I’m not alone. The women in my support group make me feel like I can get through this. They give me the message ‘We will do this with you.’ They are my lifeline.”
You can learn more about our support groups (including when and where they meet, and how to participate) on this page.
Making a Difference is Simpler Than You Think
It’s obvious that receiving a cancer diagnosis is overwhelming. As a result, friends and loved ones often feel powerless. They think there’s nothing they could possibly do that will make a difference.
At Support Connection, we know that’s not true at all. Even the smallest act of kindness can make a bad day better for someone coping with cancer.
We asked women with breast and ovarian cancer to tell us about words or actions that made a difference for them while they faced diagnosis and treatment. The simple things that offered comfort or support when they most needed it.
Thirty-eight women readily shared their answers! Their responses were amazing and heartwarming, filled with wisdom and inspiration. Take some time to read these stories and suggestions, and keep them in mind if you know someone dealing with cancer.
“One friend told me to take care of me, and showed me how to relax by listening to music, reading a light-hearted book, lighting fragrant candles. Another friend helped me fold laundry when my arms were hurting from my bilateral mastectomy. One friend made me soup. Another friend made delicious gooey brownies. All were very soothing.” Donna A.
Ellen S.
“When I first learned I had cancer I felt so alone. I had no family nearby. Two different friends offered to come with me on my appointments. I didn’t want to impose, but I was nervous to go my first oncology appointment, so I said yes. I felt touched by my friend’s caring and support. Another friend came with me to my first radiation treatment. She’d been through it years before and it helped tremendously to talk about it with her.” Ellen S.
“After every chemo treatment, my husband bought me a rose. I received 7 pink roses, then 1 red rose when I completed my last treatment. Of course, I didn’t look forward to treatment, but getting that rose always put a smile on my face. I dried the 8 roses and nine years later they are still in a vase of my desk. Support and a kind gesture from the heart goes a long way.” Bella P.
“My family (son, daughter, 2 nieces and sister-in-law) sent me gift cards to our local restaurants so neither my husband or I had to worry about cooking. My sister-in-law also cooked a complete turkey breast for dinner.
One of the most outstanding things that happened was a beautiful plant was delivered about a week after my surgery with a pink ribbon. I read the card and cried; it was from my plastic surgeon wishing me well!! I still have the plant 4 years later! He is the most caring doctor I have ever had the pleasure to meet.
Also I could not forget my wonderful caring husband who always made me feel good about myself and always gave me that big hug I needed while taking care of me every day and never leaving my side!!” Kathleen M.
Cecile W.
“Living in a 55+ community we have a committee called ‘Helping Hand.’ I had people call me daily asking if they could drive me to treatment, pick up anything for me, do errands such as cleaners, bank, post office, or just keep me company. It’s wonderful and reassuring. My suggestion is: show love, care, nurturing. Check in daily. Never say ‘Do you need anything?’, most people are inclined to say no thanks. Instead, say ‘How can I help you?’ ” Cecile W.
“I was diagnosed a few days before Christmas 2011: HER2 , Invasive Ductal Carcinoma. The emotional roller-coaster was as draining as the physical journey. I was blessed by joining a wonderful support group.
To answer the question…..What can I say or do? How can someone help? What words offer the most comfort or support? What actions, large or small, make a positive difference? When I’m asked, this is what I say to those newly diagnosed:
Remember Gracie Allen’s advice: ‘Never place a period where God has placed a comma.’ You stepped down a road you had no intention of traveling but you will get through this. The important things are be good to yourself and don’t try to do it alone. Allow yourself to accept help. As women, we try to do it all. But this is your time to take care of you. Lose the guilt.
Learn to ask for what you need. Clearly communicate your needs to anyone who offers support. Let them know specifically what you need. …….”can you put the kettle on for me? ” “can you water my flowers”. Friends feel so much better knowing this is what helps you. I am eternally grateful to my neighbor who brought me mac n cheese when I needed it!
There’s no crash course for Cancer 101…..You can never learn all there is to know but you can Control the information overload that makes your head spin by writing things down, have someone you trust write things down then address them. It’s less overwhelming when it’s on paper. Stay positive, laugh, don’t lose your sense of humor.” Nancy M.
Elaine B.
“Listen. Try to avoid ‘puppy dog eyes’ every time you see us. Ask how it’s going. Ask about side effects and try to help (rides to and from chemo, soup after treatments, go along to hairdresser if head needs to be shaved.) A pretty scarf is nice: to wear now to brighten the day, and use later if our hair falls out.
Admire our strength. Tell us we’re beautiful. My husband bought me a wonderful card telling me what a beautiful woman I was, 2 weeks after I had to have my head shaved. It meant a lot and was very unexpected.
Make some heat-and-eat meals we can eat based on our symptoms. Clean up the kitchen right after meals; the lingering smell can make us nauseous. Let us sleep. Buy us flowers ‘just because.’ Take us someplace fun when we’re feeling pretty good. Love us a lot.” Elaine B.
“After my surgery, a group of my friends chipped in for a substantial gift card to a local restaurant. My family was able to order numerous dinners for delivery. It made life a little easier. Once I felt stronger, when the girls were going out for lunch, they’d call and say they were picking me up. My cousin who lives in IL sent me 4 containers of chocolate mint chip ice cream, my favorite! It was crazy and I’m sure very expensive for ice cream! I thought it was a cool thing to do; it meant a lot.” Beth G.
Brenda M.
“When I was undergoing chemo, I received a package in the mail from a childhood friend I hadn’t seen in years. In it was the children’s book The Little Engine That Could. This small gesture meant the world to me and I will always treasure that book. Brenda M.
“Some things people can say that are helpful: Can I run errands? Can I drive you somewhere you need to go? Can I do your food and drug store shopping? Can I bring over a meal?” Pat B.
“My friend dropped a card in the mail every few weeks just to let me know she was thinking about me. Sometimes it was funny, sometimes it was inspirational. She told me afterwards she looked for cards that reminded her of me. It meant the world to me to get those cards. I still have all of them.” Danielle C.
Diane L.
“Don’t just say ‘Let me know if I can do something.’ DO SOMETHING. Call and say ‘I’m coming over to clean your house or do your laundry or walk your dog. And while I’m coming let me bring you some soup. Make a list and I’ll do your food shopping.’ Lots of people offer help and tell you to call but that’s not enough. Actually do it; don’t wait for that call.” Diane L.
“The most helpful thing people did after my diagnosis was just letting me know that they cared. My mom and sister made a trip from Florida right after my surgery just to be with me. My family and friends called often. It was a very terrifying time, and it really meant so much to me to know that people cared enough to reach out.” Patty I.
“When friends hear that you have Cancer, they are generally concerned and often ask, what can I do to help…? While undergoing and even after treatment, you do not look your best , you do not feel your best, and all you want to do is feel normal. So one of my friends did all the food shopping, brought her whole family to my house, cooked us all dinner and we sat around the table and ate and laughed.
One friend came over every single week and cut my grass and tended to the outside. Two other friends checked in on me every day, whether by phone or popping in to say hi, often with amusing uplifting stories. Another friend drove me to and from chemo every week.
The list goes on and on. The point is, when you want to help someone, follow through, don’t make empty gestures. Do what you can, because anything helps, and everything is appreciated.” Laura O.
“I was so grateful to a friend who lived miles away (in fact, on the other side of the earth) always remembering the small but important days of my cancer journey. She’d drop me a quick email on the morning I was scheduled for a follow up visit or the day a pathology result was scheduled to come out. I couldn’t believe how someone so far away could support me and keep me going. It made me feel I wasn’t alone. I had a great cheerleader.” Junko M.
Christine F.
Christine’s hats!
“One thing that really touched me: My co-workers held a ‘hat drive’ for me. I was very open about my cancer/treatment and a friend knew I didn’t plan to get a wig. My treatment started in January and by early February I had lost my hair. The winters are relatively mild here but you still get pretty cold when you don’t have any hair! I came to work one day and saw a flyer that had been distributed within the company asking people to donate hats. I got over 20 new hats! I started sending texts to my friends entitled ‘Hat of the Day’ with a photo of me in my various hats! I’m not much of a hat person, and I rarely wear hats now that my hair has returned, but it was fun to have so many options at a time when you really don’t feel (or look) like yourself. And I still have all the hats displayed in my closet!” Christine F.
“I lived by the Serenity Prayer and wear a bracelet that says it; this prayer helped me tremendously: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Some other helpful messages I received from loved ones, friends and coworkers were:
Live your life and stay in the present… Stay positive and take one day at a time…. Continue to have faith in God and pray often because he will help you and release your burdens to him… Release all the bad energy and breathe in the good energy… Not to worry about what could happen; focus on today and not worry about tomorrow… Appreciate the little things in life that we take for granted each day… Live your life and stay in the present… When you feel yourself getting frustrated and having bad thoughts stop and hit the reset button; stop yourself from continuing the bad thoughts.” Joanne N.
“My boyfriend made a big difference in dealing with my cancer right from when I was diagnosed. He took charge of going and meeting with my doctors and he sat with me during all my chemo. He made me strong and still has kept me strong even now as I go through reconstruction. He encouraged me never to give up and to fight hard to beat my cancer.” Barbara M.
Karen N.
“When I was first diagnosed, my friends made me a blessing box and put it outside my door so that people could come by, write a note, slip it in the box and I could read them at my leisure. The blessing was that I did not have to entertain and drain my already chemo depleted energy, and the loving words helped me heal.” Karen N.
““The day I was diagnosed the first thing my husband said to me was: ‘Nothing else matters. We’re going to get through this.’ His positive attitude has kept both of us going during this roller coaster of a journey.
My best friend used vacation time to come from upstate New York for every one of my surgeries. She was a tremendous support to me and it was an incredible relief to know someone was there with my husband, to be sure he ate and in general provide the support he needed but wouldn’t ask for.
My best friend at work said “I will only say this once. I would do anything in the world for you, all you have to do is ask.” We’ve traded morning texts over the last 5 years even if it’s just about the weather.
A neighbor baked my favorite cookies. The woman who did some housekeeping for me stopped by with an enormous amount of Italian food. My aunt, friends and co-workers regularly sent cards and email chronicling what was going on in their worlds. All were so thoughtful and a welcomed distraction.
I’m grateful every day for every one of these angels and their acts of kindness.’ Julie H.
“My son has just been diagnosed with a very rare stage 4 cancer of the appendix. I have been in this situation before and thought I experienced everything. To me right now the most fulfilling are acts of kindness. Not saying call me if you need me; call the person, don’t text. I have found when I hear a person’s voice and can genuinely hear their compassion, you can feel the comfort that they are truly there for you. Those of my very close friends who have not shied away are there to listen as I cry maybe scream and know that there is someone there for you. I found that those that are doing, helping with research, calling if I am up to going out for lunch or dinner offering there company is the most appreciated things for me right now.” Nadine G.
Vencine M.
“My sister organized a SignUpGenius for friends and family to provide dinner for me and my family for 4 weeks. I can’t even express what a tremendous help and how wonderful it was. Due to my surgery I was in extreme pain and in no shape to cook. These wonderful people cooked meals then delivered them in person. They also ate with us, which was the best part. Some were friends I hadn’t seen in a while. It was such a blessing not only to have them bring us food, but to join us in the meal. People want to help and often don’t know how. This gives them an opportunity to help us in such a simple and loving way and we should allow them to. The laughter alone while sharing a meal with these dear people, that they prepared for us, was worth so much and such a balm to my soul. I think it nourished both our souls, and I strongly believe had a huge part of my recovery.” Vencine M.
“One thing I still remember is that my gynecologist specifically waited to call me with the news that I had breast cancer until the evening when she was sure that my husband would be right there with me. She was so supportive and guided me through my whole journey, recommending an excellent surgeon and oncologist.” Karen P.
“I remember the awkwardness that some people had not knowing what to do or say when I was diagnosed, and it made me often think how I would handle the situation if it were me trying to bring comfort to someone. A while ago I read a Facebook post which has stuck with me and is in my memory arsenal to use when needed. It said to simply say ‘I am here for you, I love you, lead the way.’ Having been on the ‘you have cancer’ end, I find these words powerful and comforting. I also found that those who went out of their way to cook meals when I was recovering was something I will never forget and was so helpful. Others have told me they have cleaned friends’ homes.” Margaret Z.
Maria W. and her son
“I’d like to share a message I received from my youngest son. He wrote this to me on my first day of Chemo. When I was diagnosed with Stage 2 HER2 positive Breast Cancer, he was in his junior year at the University of Albany. He graduated in May of this year, and is planning on entering Law school to practice Elder Law. His love and faith in me helped me through some very difficult times. My support and love from my family have helped me to become a Breast Cancer Survivor!
Here’s what he wrote: ‘This past March, my mother was diagnosed with stage two breast cancer. While many people see being diagnosed with any form of cancer as a death sentence, she saw it as just another “bump in the road.” After countless doctor appointments and a few surgeries, she’s still going strong. Today she started her first round of chemotherapy and while I was completely freaking out, she sent me this photo. My mother, Maria Watson, is the strongest person I have ever met and WILL be a cancer survivor. She’s been a role model to me every single day of my life and this is just another example of it. I love you Mama W!’” Maria W.
“My church and my son’s high school blessed us with meals, They alternated every week for about six or eight weeks: One week Monday through Friday someone in the school would bring us a meal, and the other week Monday through Friday someone from my church would bring us a meal. Many times I didn’t know who brought the meal because they left it in the cooler they provided in front of my house. As far as I know and heard there were people that I knew and there were people I never even knew. They were so kind; I felt like there were “angels ” to help us in our time of need. I will never forget that, God sent these wonderful people in our life.” Rose M.
“At diagnosis and during cancer those closest to me treated me normally without fear in their eyes or pitying looks. I cherished that. It made me realize that I’m still me with the same hopes and dreams. Someone said to me ‘It’s ok to feel vulnerable, it’s what makes us human.’ Those words came at just the right time.” Anne S.
“Even when it doesn’t seem like we are listening, we hear what you say and can remember it later when we need it most. Emotional support and what to say? To me it’s as easy as 1, 2, 3… and 3 ½ or maybe 4, then more:
(1) Fight fear by being involved: My gynecological oncologist surgeon said, ‘I want you to stop thinking of numbers. (Stages) You need to focus on healing.’ We went on to talk about what I could do to help heal myself. She asked about my support group (family, friends, spiritual community and more), encouraged me to be active in my healing, ask questions, talk to and explore/utilize cancer care services- like the dietician, social services, survivor groups and continue my healthy support activities: meditation, yoga and walking my dogs by a creek.
(2) Laughter and hugs: When I was at my lowest point, all fear and despair, my oldest son, who lives four states away, was talking to me on the phone and told me, ‘I’ve met the woman of my dreams and we’re engaged and there will be a grandbaby. But! Not for 5 or 6 years, so you have to Live! Sit! Stay! Good Mama!’ I had to laugh. He kept me talking until my younger son got off work, came to me, and hugged me.
Meredith’s “Zen doodle hearts”!
(3) Encourage gently and with love: Several of my friends said encouraging and kind things. My best example is my friend, Glenda. She drew a sketch and gave it to me. She said, ‘You are a fierce heart and a winner.’ I kept that with me each time I had chemo. Then I started drawing Zen doodle hearts with that quote on small pieces of paper to hand out at chemo. If someone has said something that helped you through a hard time, pass it on or pay it forward.
(4) Ask if they need to talk. Then listen: My oncology nurse always answers my questions, always encourages but most importantly she listens. She listens actively, approving the activities I do that give me inner peace and shares information connected with whatever has me calling.” Meredith G. B.
“After my bilateral mastectomy one of my friends came to my house, picked me up and took me to have my hair washed and blow dried! So wonderful!” Sue J.
“A good friend came to my interview appointments while I was choosing my surgeon. After we met with the two different doctors within a week of each other, I knew which doctor I wanted to be my surgeon. I wanted my friend’s opinion too, though, that’s why I had brought her along, and she took copious notes. We didn’t want to influence each other’s choice, so like school girls, we wrote our choice on separate little pieces of paper, folded them up and exchanged them with each other. We both squealed with joy that we had chosen the same wonderful surgeon. Anyone watching this from afar would never had guessed that I was facing breast cancer surgery… they would have thought that we won the lotto. … which is what happened when my friend was there for me through this difficult process.
Another good friend was there for me when I had to have an MRI. I am so claustrophobic that I hyperventilate just thinking about it! She promised me that she would come into the MRI room with me and support me throughout. Little did she know that I would be on very good prescription relaxers to help me get through this. She came with me, made sure that I could hear her and see her feet if I dared to open my eyes. She laughed with me, not at me, as I said the craziest things during this ordeal which I fell asleep through thanks to my pharmacist and to my friend’s calming nature.
A fellow teacher made a beautiful quilt for me with a saying about how cancer will not stop me. My team teacher was there for me through the 7 weeks of radiation. I would open her classroom door and she would see the look of exhaustion on my face. Without hesitation, she would tell me to go take a nap and she would cover both of our classes. I never needed a long nap but she was there to give me the strength to get through another class.
And of course, my loving husband. After the surgery, he wanted me to recuperate for 3 weeks at our place in Naples Florida. My surgeon said that there was no way I would be able to fly – so my husband drove me down! What a nice way to spend that time.
Also: so many calls and cards. And friends understanding that if I didn’t want to think about what was to come, or worry about it, then we could talk about something else.” Elizabeth P.
Debra P.
“The best thing my friends did was visit from far and wide. We talked about the past and made plans for the future so we’d all have something fun to look forward to. Next best thing? My surgery was right before Christmas; friends invited our children for play dates, slumber parties, etc. so I could rest and they could still have fun.” Debra P.
“My coworkers at the hospital collected donations for me and one of the nurses stopped by my house with a card, I really didn’t expect any money, just their well wishes meant so much to me. When I opened the card there was over $800 and I was shocked; everyone signed the card and some of the people I didn’t even know that well. The love and support from my ICU family was really appreciated, not to mention that money went to pay for much needed house cleaning.
My sisters-in-law took my kids (ages 5 and 7) to their houses for a week when I had surgery. That was a huge help. The year after surgery my kids asked if I could have another surgery so they could go stay with their cousins.
My 70 year old mother slept at my bedside the night after surgery because my husband had to be home with the kids. I remember waking up in the middle of the night and my mom helping me to the bathroom. I guess you are never too old to have your mom take care of you; I think it was harder for her than it was for me.
I received a card from one of my mother-in-law’s friends. Her card said ‘Welcome to the club, no one wants to join.’ I had no idea she was a breast cancer survivor but she offered her support and I felt lucky to have her in my life, knowing if she made it through this, then I would too.
Even a random stranger approached me on the beach while I was on vacation with my family in North Carolina. I was wearing a sun hat and my bathing suit and had recently had bilateral mastectomies. She simply said “you will beat this, just like I did.” Sue A.
“The person that most inspired me and opened my eyes to making lemonade from lemons when I was first diagnosed was a woman who has been working as a group instructor for over 15 yrs. at the club where I work as a personal trainer. She said: take your diagnosis and become a trainer and a role model to help survivors. My motto is: everyone is entitled to a workout. If it means modifying or working around set or ever changing restrictions then so be it!! She was the driving factor for helping me become a fitness trainer and a certified cancer wellness specialist, and to turn my diagnosis of breast cancer into one that can be a way to show survivors that if I can do it, they can too.” Jennifer S.
Geri P.
“My husband was my rock. He drove, cooked, managed the house and never cracked, not once. He held my hand and helped me know all would be okay. He let me know I had his full support with all the decisions I faced. My mother and sister acted as a filter for the scary news. They made the difficult phone calls for appointments and results which they compassionately passed along to me. I didn’t have to stress when the phone rang because I knew one of them would take the sting out of any impending bad news. I had an angel at work who met me outside every day where I parked my car so she could carry my heavy book bag into school. I am right handed and it was my right side that was affected by the breast cancer.” Geri P.
“Send a card, email, text or call, add some humor if you can. Each week I received a card or two from friends, family, coworkers, etc. It made me feel connected.
The biggest challenge for me was getting things accomplished. I wanted to do everything myself but couldn’t. I hated to ask people for help, but if they sincerely offered, I accepted the help. So, offer to pick up small things at the grocery store, do light cleaning they may not be able to do. Visit and help out with a small task. Cook, dust, etc.
One very positive experience was with my caregiver. Although I am fiercely independent and was determined to stay at home after my double mastectomy, she knew better and told me I would stay with her and the family. She arranged a room for me (put her son on an air mattress in another room), rearranged furniture so I’d have a bed, a recliner… anything I needed in my own private world. I arrived from the hospital to flowers, cards, chocolate and my own private place to deal. They also allowed me to do whatever I could but were there if I needed help. Not everyone can do this but simple things mean a lot.
Another positive experience was a visit. A cousin called and asked if I was up for a visit several weeks after surgery. She assured me I didn’t need to do anything for her arrival from out of town. She arrived with an entire car load of goodies. The friends at home had arranged sunshine baskets to help me through recovery and chemo. Frozen meals, snacks, magazines, lotions, etc. Not only did she come to visit, bring me so many supplies and food I needed, but she said ‘What needs to get done?’ Again fiercely independent me said nothing; but she insisted and vacuumed and mopped the floors for me. A huge relief for me as it frustrated me I couldn’t do it.
Offer to drive to store or appointments: I couldn’t drive for a month or two due to complications. I had a friend who checked in with me frequently and asked when my next appointment was. She showed up every time, took me to my appointments and often times we would stop at a store and pick up some items I needed to buy. It was a chance to visit, get out of the house and get to a store occasionally.
Probably the most important way people can help is include the person going through cancer as you normally do. Don’t stop inviting them. I was always active and going places with friends and family. Multiple surgeries and chemo slowed me down a lot. But my friends and family kept me updated and invited me to events and kept me included. They all knew it was predicated by how I was feeling. I went to college graduations, county fairs, birthday parties, trips to the beach and numerous local events. Sure I had to take it slower than I liked, but I was there. My life didn’t stop just because of cancer.
Recognize wigs may be hot or uncomfortable: I went to a party. I couldn’t drink, had to go to bed early but I was there hanging with friends and forgetting about cancer for a while. It was a hot July weekend and I was sweating with my wig on, but I didn’t want to make anyone uncomfortable. A friend said ‘Hey, if your wig is hot, we are all ok if you don’t want to wear it; we understand.’ Wow! I wore scarfs around close family and friends but not in groups. I slipped away, swapped the wig for a lightweight scarf and returned to the party. Someone hollered ‘Yay, now she is comfortable!’ We all laughed and carried on.” Thelma B.
“I think the best way a friend or family member can behave is to interact with me the same way as before my diagnosis. I always say to them if I need your help I will ask for it. I have always gone on with my daily activities. I live alone and most of my family is at a distance. I have to work so I have to put my best foot forward. Strength comes out of necessity. After my third rodeo with my disease, it is the only way I can survive.
The best compliment my family and friends give me is to remark that they see a determination in me to live a full and long life no matter how many times cancer comes a calling.” Kathleen V.
Natalie K.
“Helpful things people can say: ‘I am here for you. You are not going to go through this alone. Whatever you decide to do, I will support you. This is your journey and I will be here for you.’ Also: ‘This is very hard to hear. I am not sure what to say. I love you.’” Natalie K.
“Getting a cancer diagnosis is certainly not easy. It is unexpected, scary and overwhelming. Having to make major decisions about your treatment plan, choosing doctors and surgeons that are on your insurance plan, what to do about work, caring for children, paying bills etc. is not easy. Having major surgery, getting chemotherapy and radiation treatments and losing your hair is life changing. Trying to pretend that you are fine in order to not frighten or burden your family and friends is difficult. Putting your wig and makeup on so you don’t scare your kids or their friends stinks.
The things that I really appreciated and that made a difference for me were the awesome friends that were there for me. Some of who surprised me with their kindness: The one who had had cancer and dropped a chemo goody bag off to me complete with a water bottle, sucking candies, hats, crossword puzzles, a diary, lotion, chap stick, pepto bismol, tums and constipation medicine. She held me by the hand every step of the way and told me what to expect. The one that took me to get my hair shaved off and introduced me to Support Connection, a support group for women diagnosed with breast and ovarian cancer. Talking about my disease and experiences and learning from the facilitators and other survivors was so very important. She was my angel and an integral part of my recovery.
Other friends helped too: Caring for my children when I was really sick, so I didn’t have to worry about them. Cooking my family a meal. Taking me to or from surgeries, chemotherapy, radiation or doctor appointments. Sending a cleaning service to clean my house. Understanding when I wasn’t up to talking or going out.” Patty W.
Looking Past the Pink
Although this article was originally published 2 years ago, the issue continue to be relevant now in October 2017, so we decided to share it again.
(Originally published by Lohud.com on June 27, 2015)
By Barbara Cervoni, Support Connection, Inc.
In a few months it will be October. Or, as it’s known among many breast cancer bloggers and advocates, “Pinktober.” It’s when almost anything – yogurt lids, cereal boxes, even fried chicken buckets – is turned pink in the name of “breast cancer awareness.”
By now, it’s pretty fair to say we’re all “aware” of breast cancer. And that’s a good thing. Being aware of your body and learning to be proactive about your health is extremely important. So if pink helped accomplish this, what’s the issue?
The issue is what you see when you look past the pink. You see thousands of women already diagnosed and living with the aftermath. You see women and families whose lives have been changed forever by breast cancer.
In spite of greatly increased awareness, we’ve yet to eradicate this disease. According Breastcancer.org, a woman born today in the U.S. has a 1 in 8 chance of developing invasive breast cancer during her lifetime. In 2015, an estimated 231,840 new cases of invasive breast cancer are expected to be diagnosed. (*Update: 255,180 in 2017)
It doesn’t end with diagnosis. In 2015, there are more than 2.8 million women in the U.S. with a history of breast cancer. (*Update: 3.1 million in 2017) “History” can mean many things. It can mean being in active treatment, or no longer in treatment. It can mean facing a recurrence, perhaps years after the initial diagnosis. The operative word here is history: For all these women, breast cancer is a piece of their personal history that will always be with them.
Since our doors opened in 1996, Support Connection has provided year-round support to thousands of women with breast or ovarian cancer. Every day, we see up close and personal what it means to have your life changed by a cancer diagnosis.
Take Karen, for instance. She was diagnosed with breast cancer in 2002 and completed treatment years ago. But she’s still dealing with aftereffects like lymphedema (chronic swelling). And she’s still looking over her shoulder for cancer to return: “People have said to me you could die any time, you could get hit by a bus. I tell them they’re right, but since I’ve had cancer, that bus is always following me. Sometimes I don’t see it. But then I wake up with a new ache or pain, and there’s that bus again.”
It’s hard to stop looking over your shoulder. Just ask Andrea. She was first diagnosed with breast cancer in 1993 at age 25. For years she thought her breast cancer battle was behind her. Until it wasn’t. Fifteen years later, in 2008, she was diagnosed with breast cancer again, in her other breast. So her battle began anew: “I was like a bull. I’d been down this road already. I opted for a double mastectomy. I was totally comfortable with this decision. You do what will save your life.”
Even harder to imagine: For some women, treatment has a beginning but no end. Metastatic breast cancer as defined by the Metastatic Breast Cancer Network is cancer that has spread beyond the breast and lymph nodes under the arm. MBCN states “No one dies from breast cancer that remains in the breast. The spread of cancerous cells to a vital organ is what kills. This is called metastasis.”
Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life. According to the MBCN, an estimated 155,000 Americans are currently living with metastatic breast cancer. Many people with breast cancer (6-10 percent) have Stage IV cancer (the most advanced stage) from their initial diagnosis.
Rita is one of those women. Diagnosed at Stage IV in 2010, she has been in continuous treatment ever since: “Women with metastatic disease aren’t talked about. Everyone thinks you have surgery and treatment and it’s done. With metastatic disease, you’re never done. It changes your whole life forever.”
So when you start seeing pink in October, think about women like Karen, Andrea, Rita and all the others whose names you don’t know. Think about the women who live every day with their own personal breast cancer story. Then, use your dollars to donate to a trusted organization.
You can donate to provide support services to help women cope with the day-to-day reality of living with breast cancer. You can donate to fund research to find a cure. Better yet… do both, and do it now. If we all chip in, we will make a difference in the lives of real women living with breast cancer.
Barbara Cervoni is director of services and communication at Support Connection, Inc., a Yorktown-based not-for-profit organization that provides year-round free counseling and other support services to women and families affected by breast and ovarian cancer. Support Connection relies on donations and grants to fund their free programs. Their annual Support-A-Walk at FDR State Park is a huge celebration that also funds their services. To learn more, visit www.supportconnection.org.
Read the original story online here.
When Your Loved One Has Cancer
A diagnosis of breast or ovarian cancer changes the life of the person who’s been diagnosed. But it also affects people who are close to them, such as a spouse, life partner, or any caregiver or loved one. The impact can be profound.
At Support Connection, we are here for everyone: The person who’s been diagnosed, as well as any caregivers or loved ones who are part of the equation.
To offer some insight, three couples who reached out to Support Connection share their personal experiences:
- Obstacles they faced
- The impact on each of them and their relationship
- Advice for others facing similar challenges
- How Support Connection was helpful, to the person diagnosed as well as the caregiver.
Dottie and Jim McHugh
Dottie was diagnosed with breast cancer in January 2005. At the time, she and Jim had two children ages 6 and 4. Her treatments included surgery as well as months of chemo and radiation. Dottie and Jim have been together for more than 25 years, married since 1993.
Barbara McCollum and Steve Scalvi
Barbara was diagnosed with breast cancer in December 2014. She has undergone multiple surgeries and chemo treatments since then. Barbara and Steve have been together for 7 years.
Jane Crossley and Valerie Peyronnet
Jane was diagnosed with ovarian cancer in early 2012 after months of painful and confusing symptoms. She underwent a series of surgeries and treatments, finishing chemo in July that year. Jane and Valerie have known each other for more than20 years and were married in 2015.
When your spouse or partner was diagnosed, what was the hardest thing for you?
Jim: I got scared at first. I had so many people in my family who died of cancer. I also felt so bad for Dottie, that she had to go through this. She didn’t deserve it. Everything was going along so well. At first we thought she had a cyst, then it turned out to be cancer. It was shocking.
Steve: I worried about how Barbara would handle it. The decision-making was hard. I worried about her physically and about how she’d get through it all. I was also concerned about the outcome, wondering what was next. My only other experience with someone having chemo was many years ago. The woman I knew who had chemo really went through hell. It worried me.
Valerie: We lost Jane’s best friend to cancer in 2008. She fought for 10 years. When she was near the end, she stayed with us and I spent a lot of time taking care of her. When Jane was diagnosed, that was in my mind. It was like a black curtain coming down over me. I was afraid for the future. I felt utter fear about the future. But then, you just gear into action; there was no time to waste.
What helped you cope with your partner’s diagnosis, treatment and recovery?
Jim: I went to all her doctor’s appointments, read everything at their offices. I learned all I could. That made me feel better and more confident she’d be okay. I also talked about it, to my family, my brothers. In my work I meet a lot of people; I talked to them too. When I shared what we were going through, I was surprised how many other people had also gone through it. That helped a lot.
Steve: I was as involved as possible, learned everything I could. I talked to the doctors and nurses. It helped me not think the worst. I joined Support Connection’s men’s group. Being with the other men, I see they’ve gone through some of the things we’re going through. I can vent rather than keep it all in. It helps to have other people just listen.
Valerie: I relied on my support network. Our amazing friends, my family although they’re far away. And Support Connection. One of their Peer Counselors is our neighbor. I’m so glad we reached out to her. She showed and gave us such strength. She connected Jane with another survivor to talk to. It helped me to know Jane was getting the support she needed. Because we’re expats, with our families so far away, Support Connection became our substitute family.
What advice would you give other caregivers?
Jim: Have a positive attitude that it’s going to be okay. Take a lot of deep breaths. Talk to other people about it. Also make sure your spouse talks to other women who are going through it.
Steve: Never project the possibilities, it only leads to fear. Get the facts. Take it one step at a time. You can worry about the worst but it may not happen. Go to appointments, let the doctors know you’re involved. Ask questions; she may not think of the questions you have. Know you’re not alone. Cancer is so common, so many people understand what you’re going through. Reach out, ask about support groups. Share with friends, clergy, a counselor. Talk it out. It won’t always give you answers, but by talking about it you’ll find the answers yourself.
Valerie: Don’t think you have to be the strongest person on the planet. Express your feeling to each other and to someone else who understands. Don’t keep things bottled up; it will backfire.
When you were diagnosed, what concerns or worries did you have about your spouse or partner?
Dottie: Somehow all along I knew I’d be okay, I never thought I’d die. But my heart was breaking inside for Jim. I knew he was scared because of his past experiences with cancer. I kept trying to reassure him. I knew he was trying to be “strong.”
Barbara: I didn’t really worry about Steve, he seemed like he could take it. But I was concerned about all the changes my illness meant for him, the impact it had on his life. He has grandchildren who aren’t nearby, and he didn’t visit them while I was sick because he wanted to be there for me.
Jane: I couldn’t think about Valerie during my treatment; I was totally consumed, so exhausted. It took so much energy just to breathe. I had to focus on getting better. It was overwhelming. Later, I was more aware of what was going on with her. She maintained such a high level of attention to everything. When I finally started feeling better, she was exhausted and couldn’t take on anything more. I realized then how hard it had been on her.
What are some things your spouse or partner did that were helpful?
Dottie: Jim was always there. He kept reassuring me we’d get through this, together, that I wasn’t alone. He stepped in to do more with the children. He was a big cheerleader outside of our home, talking to other people about what I was going through, bringing back their encouraging words and positive feedback. He was very sweet, emotionally supportive. Sometimes just having his silent support was what helped the most.
Barbara: Having Steve with me was so important. He went to all my appointments and tests. He talked to my doctors with me, helped me make decisions. He went to all my chemo appointments, 3-4 hours each; he stayed the whole time to keep me company. He took care of me at home, did all the housework and cooking because he knew I wasn’t up to it. He talked to a nutritionist for suggestions on what to cook when I was so sick from side effects. He went through everything with me.
Jane: Valerie was like a rock for me. She was there every moment. In the middle of the night. 24 hours a day. She never said no to anything, any special requests. She made meals for me, took care of my meds, tried to make me laugh. She involved herself in every feeling I had.
What changed for you as a couple?
Dottie and Jim: We’d been thinking about having a third child and then this happened. It’s one thing to make that decision yourself, it’s another thing to have the choice taken away. We also went through a rough patch when the treatment put Dottie into menopause overnight. It had a huge physical and mental impact. It was hard on us. We had to find ways to communicate, to step back and remind ourselves what was important. In the end, it made us stronger, brought more unity to our marriage, knowing we survived all this.
Barbara and Steve: It really changed things. We decided to keep things as simple as possible. We looked at life different, one day at a time. We didn’t project what our future would be. We became stronger; we never gave up even when things were bad. We became closer and learned to deal with cancer and making decisions together since it affected both of us .
Jane and Valerie: It made us much stronger. Because of what we went through, we’re much more confident about facing anything that might come our way. Jane: I have a deeper sense of Valerie’s strength, tenacity, love, resourcefulness. I feel even more committed to us and to her. Valerie: I saw things in Jane I’d never seen before. She never complained. I gained such admiration for how she handled it all. It made me so proud of her.
What advice would you give other couples?
Dottie and Jim: Allow your partner to see your vulnerability and uncertainty so they can help you. It gives them purpose; they really do feel a sense of helplessness. If you feel like crying your eyes out, screaming at the top of your lungs, or just want to sink into your partners’ chest and let them bear the weight of fear and uncertainty, do it. It’s necessary for both of you. Remain open, communicate, be kind to one another. Make sure your partner knows you still love them the same. Make time as a couple. Go on a date. Take a weekend escape. Go to a movie, just spend time together.
Barbara and Steve: Never give up. Don’t let it get to you. Keep fighting. Get advice from as many professionals as you can. There’s always new and changing information. You need to stay informed.
Jane and Valerie: Be open with one another. Don’t be afraid to share with one another. Don’t think you have to protect the other person from what you’re feeling.
How was Support Connection helpful?
Dottie and Jim: The staff is amazing. They help you through things you wouldn’t even think about. And whenever Dottie came home from her support group, she was like a different person. Also the Support-A-Walk is great every year. Seeing so many people, other couples, reading the names people are walking for. We’ve met so many people we know who we didn’t realize were affected by this too. We see we’re not the only ones going through it. It’s always uplifting, so reassuring to be there.
Barbara and Steve: Barbara talked with two counselors regularly and we talked to a counselor together. Barbara also joined a support group. She’s made new friends, women she can talk to without burdening Steve. Without Support Connection everything would have been even harder. The decision-making process would have been more difficult for us. We got so many answers through Support Connection.
Jane and Valerie: Talking to the Peer Counselors was so uplifting and gave us such hope. When Jane started losing her hair, she spoke to a Peer Counselor who really understood, because she’d gone through that too. She listened to everything, it was so helpful. Attending the Support-A-Walk and other events, you feel so connected and see you’re not alone. No one else can give you that, only people who’ve been through it. It’s very powerful.
We are here for you!
If you have a loved one diagnosed with breast or ovarian cancer, don’t hesitate to reach out to us with questions, concerns, or just to talk to about it.
Call our Peer Counselors at 800-532-4290. You can also send them an email. They’ll be happy to hear from you!
Parceling Energy With Cancer
By Jane Biehl PhD
Reprinted with permission from CURE® www.curetoday.com
Jane has been a cancer survivor since 2010. In this article, she addresses the question: What do you say when people remark to you that you look great or that there is no way you just had cancer or chemo? (Original publication date April 11, 2017)
“You look great. You have so much energy. You must be feeling good.” Daily, I am bombarded with comments like this from well-meaning friends and relatives.
Sometimes I just want to scream, “It is all an act, a façade. I am exhausted and all I want to do is go home and sleep.” It is NOT just being tired…
I have three graduate degrees and pulled my share of all-nighters. This type of chemo fatigue is different. No amount of sleep will bring back the energy like it did when I was worn out from working or studying. There are times when I get out of bed feeling like a bucket of lead is weighing me down.
I have been battling a nasty blood cancer called myelodysplastic syndrome for seven long years. I have fluctuated in various stages from being in remission, partial remission and out of remission. This insidious cancer is always lying underneath the surface and ready to strike again, so I will be on chemo forever, even when the blood reports state I am in remission.
I was on oral chemo for six years, which made me exceedingly tired. When the cancer worsened, I was forced to change to 10 shots in the stomach and the arms for five days every month. Then I found out what malaise really means! I have suffered many of the common side effects ranging from diarrhea to chemo fog and weakness. Additionally, I was born hard of hearing and my hearing has deteriorated to where I am now profoundly deaf.
Most people would be surprised to hear me say that the worst side effect, besides the hearing loss, is fatigue. I am very social and always on the go. Throughout my life, I have worked full-time, gone to school part-time and often worked two jobs. As a result, I have been fortunate to be of service in several fulfilling careers including librarian, counselor and college teacher.
I was forced to quit both of my beloved jobs after the cancer was diagnosed. I was devastated because I love to work. However, I am learning to parcel my energy.
What does this mean? The definition of parcel is “the act of separating or dividing into parts and distributing, allotting or apportioning.” I know now that I need to allot so much energy to each task I do. Especially during chemo week, I can only perform one major task each day. All of my energy goes into that activity, whether it is meeting with friends for dinner, conducting an educational program with my hearing ear service dog, or working at home on bills and correspondence. I give all I have to that task and then head for bed and collapse.
I made other life changes. I added an extra career to my resume, which is writer. This career can be done on my own timeline. If I feel a little more energy, I write and if not I don’t. I take cruises for vacations, so I can rest in between stops at tourist points. For my volunteer work, instead of showing up weekly at an agency, I send cards to persons in my church and can do that on my better days. I also do programs with my service dog and that is the only event for the day.
Now I no longer feel like a fraud when I am told I look wonderful. I have no desire to explain to people I really feel lousy and want to go home and to bed. I smile and say, “Yes, I feel good today.”
All cancer survivors need to find their own path to kicking cancer’s butt!!! It is truly a process. My energy is mostly gone, but I pace it to do the activities that are the most meaningful to me. The best part is I am learning what is most important in my life, which is spending time with much loved friends and family!